Prior to the transplant, the child’s bone marrow is suppressed using high-dose chemo-therapy (radiation is generally not used to prepare a child with a brain or spinal cord tumor for a PBSCT). This portion of treatment, called conditioning, kills tumor cells and makes room in the bone marrow for new stem cells. The child in the following story had conditioning for a single transplant that included the chemotherapy drug thiotepa. Children who receive thiotepa before tandem transplant do not usually have such severe symptoms.
Our 2-year-old daughter had high-dose chemo and then a stem cell transplant to treat her medulloblastoma. The transplant was terribly hard. The thiotepa made her skin peel off, and she was wrapped in gauze like a mummy. Her mucous membranes sloughed off in her mouth and down her esophagus and she needed a morphine drip for pain. Her counts went to zero and it was very scary. There was certainly a lot that could go wrong. However, she recovered quickly and was back in preschool 2 months later. She is 6 now, and has mostly happy memories of those days. Our family sort of took over the room. We brought in a radio and we all danced. I’d take her out of bed and put her on the floor on a blanket and we’d picnic. We sang a lot. Now, she can’t wait to go for her checkups.
Conditioning regimens vary according to institution and protocol and also depend on the medical condition and history of the child. For tandem transplants, the chemo-therapy is given for 2 to 6 days; in many cases all or part of the therapy is given in the outpatient setting. Your child may need IV fluids at night to provide proper hydration. It is important that you understand who to call and the number to use if problems occur at night.
If your child receives conditioning chemotherapy as an outpatient, she will need to go to the transplant unit no later than the evening before the procedure for hydration. The transplant itself consists of simply infusing the stem cells through a central venous catheter into the child, just like a blood transfusion. The stem cells travel through the blood vessels, eventually settling in the bone marrow.
DMSO, the most common compound used to protect stem cells during storage, has a strong odor that might be present during the infusion. This odor can be minimized by washing the stem cells during the thawing process, although the DMSO can often still be smelled even after washing.
I cannot say enough good things about the transplant center. They were very family-oriented, allowed us in the room 24 hours a day. I was allowed to sleep in bed with her (I just told the nurses to make sure to poke her and not me). The nurses were wonderful, and I still think of them as family.
A transplant doctor will monitor your child during the infusion of stem cells. A variety of minor to major complications might occur, including:
- Abdominal cramps
- Difficulty breathing
- Slow heartbeat
- Tightness in the chest
- Skin rash
- Changes in blood pressure
- Nausea and vomiting
- Unpleasant taste (usually relieved by sucking on hard candies or flavored liquids)
- Kidney failure (seen less frequently if stem cells were washed)
Treatment was a long haul for Andrew. It was a time that we had absolutely no control over anything. You watch your child in the most horrible state. It was literally a time that we lived minute-by-minute and sometimes second-by-second. We’re still dealing with the side effects. He doesn’t have his energy or full strength. It’s coming back, but it’s a slow process. He missed about a year and a half of school during treatment for his brain tumor.
Stem cell transplant was almost like a rebirthing for Andrew. He went from being so angry about his diagnosis to a much wiser, much more confident child. His insight is wise beyond his years. Andrew’s involved in quite a bit of public speaking. He’s gone before elementary, middle school, and high school groups and DARE groups, talking about how important life is, and why it’s important to enjoy life, and how it feels to almost lose your life.
Andrew (now 13 years old) adds:
Public speaking started with my teacher. He asked me if I’d speak to a high school class, and I said sure, if someone can learn from what I’ve been through, I’m all for it. I consider myself blessed with a tumor, not diagnosed with it. So many good things have come from it. Treatment feels like a never-ending battle, but it’s not. You can’t be afraid to die; thinking like that will bring you down as fast as anything. You need to have faith in something, I had faith in God, but you need to believe you’re going to make it. Treatment is painful, but you have to think of the outcome and keep your eye on the goal. It’s difficult, but not impossible.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. The Brain and Spinal Cord
- 3. Types of Tumors
- 4. Telling Your Child and Others
- 5. Choosing a Treatment
- 6. Coping with Procedures
- 7. Forming a Partnership with the Treatment Team
- 8. Hospitalization
- 9. Venous Catheters
- 10. Surgery
- 11. Chemotherapy
- 12. Common Side Effects of Chemotherapy
- 13. Radiation Therapy
- 14. Peripheral Blood Stem Cell Transplantation
- 15. Siblings
- 16. Family and Friends
- 17. Communication and Behavior
- 18. School
- 19. Sources of Support
- 20. Nutrition
- 21. Medical and Financial Record-keeping
- 22. End of Treatment and Beyond
- 23. Recurrence
- 24. Death and Bereavement
- 25. Looking Forward
- Appendix A. Blood Tests and What They Mean
- Appendix C. Books and Websites